Thursday, April 25, 2013

God's Grace

Well, I found my last post a little ironic yesterday as I was riding in the back of an ambulance again.  Was I truly able to be thankful?  Was I truly able to trust?

Yesterday, while sitting not even 8 feet from me, Mimi put something in her mouth and began to choke.  She coughed and vomited, coughed and vomited, and then turned blue.  Even as I was doing all I knew to do from all the CPR/First Aid classes, my baby turned blue and lost consciousness. 

I am praising God that it did clear, although we never saw it.  But she was still very blue and very unresponsive.  The firemen were here in less than 5 minutes and they were the most wonderful men!  Hard to know if they just seem bigger and stronger because they come in the moment of your greatest need, or if they are just THAT big and strong.  To see strong hands holding my tiny girl so tenderly reminded me of my Heavenly Father holding her even then.

Although she was disoriented and a little blue still, she quickly recovered.  Much quicker than I ever will!  I don't think my heart is beating normal yet.  Because of her special needs and how slowly she was returning to normal color, the EMT wanted us taken by ambulance to the nearest children's hospital.  I was torn, but he didn't give me much choice!  He was bigger than life and very no arguments from me.

So, once again I found myself in the back of an ambulance with little Mimi.  How different this trip was from the trip almost 5 years ago.  Instead of being whiter than I ever believed an "alive" person could be, she was pink and rosy.  Instead of being unresponsive, she was cranky to be stuck in her car seat.  She eventually fell asleep and I had plenty of time to think over the last 5 years.  I was still a bit in shock and we still didn't know for sure that she was okay, so there was a lot of prayers.  Asking Him to show the doctors what was wrong, if there was something.  (At the time, we didn't know she had swallowed something - so it raised a lot of questions as to why she would pass out...)

But once again, I was able to praise my Savior for His Hand upon my family....back to my story from the previous post....

After Mimi had been brought back to life - we were told she was "resuscitated" - but were never given any details - there were so many questions.  She obviously had a severe infection, but what was it?  Her abdomen was full of fluid - where was it coming from?  They stopped all feeds and just gave her nourishment through the IV. 

This is when I truly learned that medicine is a "practice", not a science.  I still had had the impression that doctors could figure all this out with tests and knowledge.  But the first day I heard the shifting from the PM doctor to the AM doctor, I was shocked how different their views were.  We had quite a few doctors, in fact.  One that I called Dr. Gregarious (and not in a nice way), wanted to just "cut her open" and see what the problem was.  Fortunately, the other two doctors (whom I highly respected) shut him down like a too eager puppy.  Horrors.  All that could really be done was to wait....and wait....and wait.

The only thing that marked the passing of my days was the changing of the nurses.  I slept in a chair in the PICU because I couldn't stand to leave her.  I wanted her to know that I was always there, holding her hand or singing to her.  Plus, I realized from our previous hospital stay that although the doctors and nurses cared a great deal - they had to take care of all the patients - not just Mimi.  She does not cry aloud, she does not fuss a loud.  There was no way they would know she was hurting or scared unless they happened to be standing there....

Finally they moved us out onto "the floor", into a regular room where I had a chair that converted to a bed and where I could eat in the room.  (In the PICU, I would run outside the doors and scarf down my food and rush back within 5 minutes.  I don't know if the staff was impressed or grossed out - I just didn't care.)
But, the pic line was already beginning to fail....and her liver was starting to react to the "food" put through the IV.  I could tell by the serious look in our doctor's eyes that he was gravely concerned....

They decided that while we were there, they would have some of the specialists that we were supposed to see, just come see us on their rounds.  One was Dr. Stefanelli, an amazing pediatric cardiologist.  I first saw him at the other hospital when Mercy was born.  Before I knew who he was, I would see him walking through the hallways.  I must admit he was drop dead gorgeous.  However, I took an instant dislike to him because he seemed so cold and curt to the staff.  However, when he came in to Mimi's room, he was so tender and kind - one of those that truly and tenderly cared for his little patients.  After a week or so, I realized that he had to be so cold to the nurses because they flirted so outrageously with him.  Poor man!

When Dr. Stefanelli came to see us this time, I was pretty worn down and emotional.  I was glad for his honest questions and straight forward answers.  He was there with his assistant to do an ultrasound on Mimi's heart.  (She had 4 small holes).   He was gently telling me what he was looking for as his assistant flipped the machine on.  He smiled at me and then glanced at the screen.  His face went rock hard as he clenched his jaw.  He nodded at his assistant and she raced out of the room.  WHAT?  What just happened?  He leaned forward and put his hand on my shoulder.  He softly said, "Her lung has collapsed.  Please don't worry.  I will get her the help she needs."  Even as the tears began to fall down my face, he strode out of the room and began calling out orders to the nurses to do exactly as he said.  That man was a force to be reckoned with!  Another angel in disguise?

Within minutes, Mimi was back in the PICU with a tube inserted in her lung to drain it.  This is extremely painful - how much more could my little one take?  And the pic line began to fail in earnest....I couldn't take it anymore.

One of the (many) difficult things about staying in the hospital is that there is no place to cry.  If you cried in front of the nurses, or they could tell you had been crying, they immediately sent for the social worker.  He was very nice - but I didn't need to assure him again that I would be alright.  Some days my mom would drive the 40 minutes to the hospital and I would take her car and go home for a few hours to be with my other treasures at home - but I would sob all the way home and all the way back.  Gut-wrenching, loud sobs - because it was the only time I was free to let it all out.  I don't know how I managed to safely drive - God must have guided the car with His own Hand.

So I bit my lip as we seemed to have taken 10 steps backward - after only one step forward!  Finally, one of the surgeons that I highly admired (and who helped to keep Dr. Gregarious in check) came to see me privately.  He said he was sure that the pic line was going to fail completely and that he wanted to run a Broviak line to her heart before that happened.  He said it was a bit of an unusual step because Broviak lines are usually reserved for cancer patients - but he said he was afraid for Mimi.  How do you hear the concern in such an intelligent man's voice and say, "No"?  He did the surgery the next day, just as the pic line failed completely.  God's grace, again.

Her body was still having a tough time with the IV feeds, but they could only put about 3 mls of food in her per hour without her throwing up.  (Just to give perspective, she should have been having about 25 mls per hour)  Her lung was still draining nasty pus.  By now, we had been in the hospital for 3 weeks....3 long weeks away from my home.  3 long weeks of not knowing if what the next day would bring.... Finally, a doctor told me that she would probably need the drain in for another few weeks.  A few WEEKS?  I couldn't bear the thought.  I collapsed in prayer the moment he left.  I loved my baby and would do anything in my power I could for her - but I didn't have anything left to give.

Tuesday, April 16, 2013

A Monumental Day

Yesterday was a monumental day for me! 
I am afraid some of the joy has diminished with the news from Boston.  I am praying for each of those families.  I am also praying for those in that area, whether they were there or not.  How great the fear must be!  As a mama, it would be very hard to let my children leave the house again - I would have to learn to trust Him on a whole new level to get beyond such terror.  Come, Lord Jesus, come...
I am afraid that most people will not understand why yesterday was so huge...but I know a few of you will... 
Yesterday I had the first appointment for my new Grace at Mary Bridge Children's Hospital.  We had gone to a few other appointments close to our home, but this was the first at Mary Bridge.  I am afraid that "Mary Bridge" is said at our home with a bit of fear and trembling. 
When Mimi was 2 months old (we had only been home from the NICU for about a month), she was throwing up all her food.  She is g-tube fed and I assumed I was doing something wrong.  We were sent to Mary Bridge for a test.  My kids were terrified to let me out of the house, but I assured them that it was just a little test and I would be home about 2 hours later.
That was not to be.  It was determined that Mercy had pyloric stenosis - the thickening of the muscle at the end of the stomach.  Hers was so severe that no food was getting past it - it just came back up.  This is an immediate admission to the hospital.  I didn't even get to come home to say good bye to the kids.  I sat in the lobby waiting for our room and cried my eyes out!  I could not believe God would allow this to happen.  My kids were in a panic - along with poor Handsome and my mom.  But the staff assured me we would be home in 2-3 days.
Well, we did go home after 3 days.  We were so relieved, The Helper's birthday was the next day, we were ready to celebrate.  BUT, within an hour of being home, I knew something was wrong.  Mimi was in such horrible pain.  Within 6 hours of leaving Mary Bridge, we were racing in the back of an ambulance from the local hospital back to Mary Bridge.  They couldn't get an IV in her, she was as white as death.  I was in so much terror, I was going numb.
Thus began our next 30 days in the hospital.  She had a horrible infection - they didn't know what it was.  They tried all night to get any kind of line in her.  I finally called Handsome and told him to come.  When he got there, the doctor told us their only option was to cut her neck open and tried to access a vein that way. HORRORS!  We were told to "prepare" and come see her one last time before the surgery.  Not the words you ever want to hear from a doctor - or see the sorrow in his eyes as he speaks to you.  Handsome said we would be right there, but wanted to stop and pray.
We weren't 4 minutes behind the doctor, but when we reached the door of the NICU, we were told that we couldn't go in and that the social worker was coming to speak to us.  As a parent, you just know.  They don't send the social worker unless it is grim.  We sobbed in the waiting room and called our parents.  I thought, "I can't be planning my baby's funeral!"  What grief - indescribable.
After about 20 minutes, a jovial older doctor bounced out and said, "You can go see your baby."  There was another couple in the waiting room.  Handsome looked at them and said, "You must mean them, our baby is dying."  The doctor said, "No, it's your baby."  We were sure he was wrong, but followed him back.  Our little Mimi was so tiny, even in that NICU bed.  She had bruises everywhere from all the attempts to run a line.  She was so swollen and white.
Finally, the story came out.  The jovial doctor had been called to do the surgery with the neck.  He was sitting next to a colleague and told him what he had to go do.  The colleague, who was NOT in pediatrics, asked if he could come try first.  He jammed an IO in her leg (a medical procedure developed in combat where a spike is jammed into the bone and some fluids can be absorbed that way) and then was able to run a PIC line.  Everyone was in disbelief.  We never met this doctor.  His name?  Doctor Lord. 

No kidding.
However, this was not the end of our horrific journey....but little Grace needs her breakfast, then Mimi.  I will be singing praises over her this morning.  Such memories....stay tuned.
To Him be all glory, honor, and praise!

Wednesday, April 3, 2013

Baby Blues

As I watch my wonderful husband snuggle our newest Grace from Taiwan, my heart aches for all those who don't know a Daddy's love and his strong arms around them.
First, my heart goes to my daughters waiting in Eastern Europe.  Oh, Serenity and Hope, how Mama longs to hold you.  To at least try to start to soothe all the wounds your little hearts have suffered over the years.....

But then, my heart drifts to four others...four that need families desperately...four that have been passed over again.

Little Darlene - whom we call "Dori" here.  What a dolly.  This is the worst picture of her.  I have seen videos, she is so tiny and so precious.

Precious I have loved her from the first time I saw her picture last summer.  Where is your family, little one?

Sweet Millie....soon will be 9 years old.  Oh, baby, you need a Daddy to swing you up in the air and a Mama to dress you in pretty dresses.  Millie has a $6500 grant toward her adoption.
And Sammy - little boy, there is a Daddy here that would love to scoop you up.  We are praying for a family for you.  How you would thrive!  UPDATE:  It appears that Sammy has a family!  Praise the LORD!
Please join me in praying for these ones...
Please also keep Yu-Chi Grace in your prayers.  We are starting her doctors' appointments.  How hard they are on her!  It hurts her to move.  It hurts to be prodded.  Oh, she is so scared.  Please pray for relief for her from her pain.  We see the GI doc tomorrow - hoping to get the g-tube placed quickly as we have already made one ER trip to have the NG replaced.  Not fun.
Sweet Jesus, act on the behalf of these little ones.....

Tuesday, April 2, 2013

"Polite" Conversations

Imagine you woke in a hospital bed.  Maybe you have no idea how you got there.  You are in excruciating pain and you are thirsty...oh, how you are thirsty...and hungry.  You cannot move out of the bed you are in, you can do nothing to relieve your pain, your hunger, or your thirst.  You lay and wait for someone to come....
Surely someone will come.....surely?
As the hours pass, you are slowly overwhelmed with loneliness.  Is there not someone who cares?  Can loneliness drive someone insane?  You are beginning to wonder.
Finally, you hear someone coming!  Finally relief! 
The person who comes roughly changes you, shoves some nasty food and a putrid drink down your throat - hardly soothing and comforting....and then just leaves.  Nothing for your pain...nothing for your loneliness...
"Wait!  Wait, come back!", you try to call, but no one hears.
Oh, the loneliness and despair.  How can this happen?  Where are the people that care?
Finally, one day, you awake to the blessed sound of conversation drifting around you!  Your eyes pop open to see all kinds of people...doctors, business men, young men and women, older men and women, pastors, church goers, neighbors....Ahhh, finally!  Someone will help you!
Yet, their conversations drift over you, they are never directed at you.  The conversation is all very polite and all about you.  They are discussing you - discussing very politely if your life is worth saving.  
Some are very focused on the financial aspect - how much care you will need, how much that will cost with rising health care issues.  What if they don't have enough money?  What a risk!  They argue that wisdom and caution must be used.  Your life would be very expensive to maintain.
Some are very focused on the time aspect.  How will people have enough time to take care of you with all the rest of their responsibilities?  There is so much that should be done in life.  So many ministries.  They say, "Just think about how taking care of you will limit their ability to be flexible for whatever God may call them to do."  They shake their heads....they must keep their time must not be tied up.
Some focus on how crazy it seems.  God surely couldn't be calling someone to lay down their life, ummm, sacrifice their life, umm waste their life (yes, that sounds better) on one person.  God surely has great plans that need to be attended to....surely greater than giving up everything for one person.
Some look around and say, "Look, this person is cared for.  They are changed and fed.  That is enough.  They are doing well.  What more could they need?"  As if all a life needed was a little food and water.  As if there was no such thing as a human heart and the God-given need for family.
Many people mention the word "calling"....saying they don't feel called - or gifted to take care of you.  Surely God would never have them do something they didn't want to do, ummm, feel "called" to do.  God wants us to be happy right?  He said He called us to a life of sacrifice, umm, happiness.  Because He loves us!
This polite conversation goes on for a long time.  Some people are quickly done with the conversation and exit.  Some leave and come back....leave and come back.  Some earnestly continue this polite conversation for a very long time.  But in the end, they are all satisfied with their conclusions that you are not their responsibility...
So many polite conversations...
Polite conversations over a dying man.
It reminds me of another "polite" conversation recorded in John 9. 
A blind man is suffering in his condition....he needs care.  He needs help. 
What do the disciples - the followers of Christ - do?
They start a "polite" conversation over the top of him....trying to determine whose fault it was that he was in the condition he was in?
The text does not say, but I would think the logical next step to finding out whose fault it was that he was blind, would be that they could then determine whose responsibility it was to care for him.  If it was his fault, then no one needs to help, right?  If it was his parents' fault, then it would be their responsibility...
Obviously, it didn't occur to the disciples to reach out to help ease his suffering...he was not their responsibility.
Can you imagine being that man?  To have this "polite" theological debate going on around you, while you are suffering?  While you are crying out for help.
All glory to Christ, that not only did He point out the significance of each life in God's plan, but He reached out to ease this man's suffering.
Others were too busy having a "polite" conversation over a suffering man.
Why do I bring this up, do you ask?  As I sat in the orphanage/nursing home with my sweet Yu-Chi girl, I saw other little ones in horrible suffering...incredible pain...terrible neglect.
Just as other families have said - and I did not understand - the caregivers love the children but they have NO resources, NO time, and NO education on how to take care of these precious little ones with needs.  They can feed them, change them, and brush the hair out of their eyes if there is time - maybe even whisper a sweet word in their ear - but this NEVER replaces a true family.  It is better than nothing...and some children have nothing.
As I was praying for each little twisted body and pain-filled face, it struck me that these were the little ones that we have "polite" conversations about.  
Little lives that we "hem and haw" over...
"Is this really worth our time?" 
"Is it too crazy?" 
"Do we already have enough on our plate?" 
"We are so tired this really the right thing?" 
 "What about the rest of our children?  Is this fair to them?"
"Shouldn't others step forward, too?"
Don't get me wrong, all of these questions do have their place.  A husband and wife do need to carefully consider the commitment that they are making! 
However, there is a difference between saying,
"How can we make this work?" and "Should we make this work?"
Maybe a better question to start with is "Can God make this work?" - meaning, has God given us the basic things necessary to do this?  Do we believe that He will provide for all aspects of what He asks us to do?  Do we believe that He is Sovereign?  That He can open or close this door according to His perfect Will?
Then, if the answer is "Yes" - then move on the the "How" instead of the "Should" - don't spend time on polite conversations over dying children.
Really, should we be saying, "Should we save this child from pain, anguish, suffering, and death?" or should we be saying, "How can we save this child from pain, anguish, suffering, and death?'
The "how" implies actions - not polite discussions that make us feel better.
I will state again - not every family will adopt!  Maybe the "how" for your family is fervently praying for another family to step forward.  Maybe it is advocating and sharing that child's needs.  Maybe it is donating to their adoption account if they have one.  But if you are obedient to what God says in His Word, there will be some kind of action!
I understand the polite conversations - I absolutely understand them.  Handsome and I have had plenty of our own polite conversations - that is how I know they exist!  Before Yu-Chi came, we knew we wanted to adopt Serenity and Hope - we had countless polite conversations, until God finally grabbed our attention and rocked our world!

Honestly, the first night that I came home with Yu-Chi, it was 11:30 pm and we were exhausted!  Handsome was tired from running the show at home while I was overseas and I was exhausted from travel and missing my family.  He looked at me and said, "Can we really do this?"  I saw the anxiousness in his eyes - but I also knew his heart.  He was not really questioning our decisions, he was just feeling the weight of them.  However, I was instantly transported back to the babies left behind in the orphanage and I assured him that it was a matter of life or death; that God has clearly shown us time and again that He will provide whatever we need. 

This does NOT mean that we aren't so tired that we can barely function.

It does NOT mean that we don't have to rely on Him to provide for each medical bill and need for our growing family.

It does NOT mean that there aren't times of tears and sorrow and grief.

It does NOT even mean that we never have to go back to our Savior and ask, "Are we doing what You want us to do?"

But I am hoping that it means that we are done with "polite" conversations.  That our only question is, "What are You asking us to do in this situation?"  Not trying to find a way to dodge the responsibility laid before us.

No more polite conversations over dying children....we will be His hands, His feet. 

As many have said, God has called the church to care for the orphan...not governments, not organizations, but His people.....So, if we do not, who will?  Do we not think He will not call us into account for the neglect of His Word and His children?

To Him be all glory, honor, and power.

Until He comes....